Parenting with Rheumatoid Arthritis

As the mother of a three- and a five-year-old, I am frequently confronted with the ways rheumatoid arthritis impacts my ability to be an active parent. There are many times when my kids ask for piggy back rides or games of chase, to rough house or to be carried, and these activities would simply be too painful for me to grant these requests. As this disease often fluctuates in its severity, there are days when I can give them “airplane rides” or hold their hands while they walk their feet up my legs until they return to the ground with a backward flip. Then there are other days when they want to do those same activities and I’m not feeling well enough to lift their weight, to tightly grasp their hands, or even to have their heads resting on my shoulders during story time. Rheumatoid arthritis is disease that baffles adults, and I can only imagine how strange it must seem to a child. While I often focus on the ways RA prevents me from engaging in all the activities I’d like to do, I am making a conscious effort to reflect on the lessons my kids might learn from having a mother with physical limitations. Here are the things I hope they will learn, the lessons I hope to teach them, as we navigate the impacts of RA on our family life. Be compassionate. The world is full of pain and hurt of all varieties, physical and emotional. Humans are often quick to judge each other, although we rarely have all the information required to make an accurate judgment. When I cannot engage with my children in a way we would both enjoy, I explain this to them. For example, I say, “I love snuggling close with you and having your head on my shoulder. Tonight my shoulder hurts, and having anything touch it, even your sweet head, makes it hurt worse. Can you sit right next to me while we read, without touching? Then as soon as my joints feel better, we will snuggle close again the way we both like to.” In the present moment I hope to convey to them that when I have to keep them at an arm’s length, it’s not a personal rejection, but rather a physical necessity. Long term, I hope they are learning that everyone has needs, and that being sensitive to those needs is a way to demonstrate love to others. Suffering impacts the way we act, and we don’t always know when someone’s suffering. Rheumatoid arthritis not only affects my body; it also affects my mood. When I am experiencing significant pain and/or fatigue, it is a challenge to be as positive and as nurturing as I’d like to be. Therefore, when I realize RA has impacted my patience level and I’ve been quick tempered, I’ll say, “I’m sorry that I said that in an unkind way. Right now my bones hurt, and it’s making me cranky. Remember when you hurt your knee last week, and you got upset with your brother when he was trying to play with you? When my bones hurt, I get sad and cranky too. I’m going to try my best to use a kind tone of voice even when I don’t feel well. It will help me if we can all try to be extra kind to each other.” I hope they can learn that when a person is unkind, it likely has nothing to do with them but rather is due to that person being in physical or emotional pain. By taking a step away from a self-involved focus to an understanding that everyone has a unique reality, it becomes easier not to take things personally. I hope that when they encounter a negative response from another person, instead of thinking, “That person’s a jerk” or “I wonder why s/he doesn’t like me,” they will instead think, “S/he isn’t happy right now. I wonder what that’s stemming from.” Learning to approach others with curiosity instead of rushing to judgment and/or taking everything personally could open my children up to much more fulfilling relationships with others as they get older. Kindness is comforting. We often can’t solve other people’s problems, nor resolve all of our own. However, kindness always helps. When I am in pain, I let my children know I need kindness. I might say, “Right now my hip really hurts. It would help if you could tell me a story/sing me a song/give me a hug/etc.” They are indeed learning to respond to my flares with loving attention. For instance, sometimes I’ll be in bed with a heating pad and they will run into my room and bound onto the mattress. When I say, “Please be gentle! My bones hurt and they need to be still,” my kids will immediately settle down, be cautious as they come closer to me, and give me kisses and gentle hugs. While I will likely never stop wishing RA didn’t intrude on special moments with my kids, when I see evidence of their budding compassion and consideration, it warms my heart. For example, my boisterous three-year old son will sometimes pause to say, “Mommy, does your leg hurt today?” before he starts trying to climb up me as if I were a tree. My five-year-old will ask, “Do you feel okay Mama?” before asking to be carried. I do wish there wasn’t cause for them to be so sensitive to my needs, but I am proud that they are learning to be sensitive. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Being a parent is a tiring job, and often, life with a chronic illness often comes with fatigue. Both together can be a recipe for complete exhaustion and feelings of defeat. Fatigue is an unrelenting feeling of tiredness or weariness that often does not improve with rest. Some describe fatigue as being “tired to the core” or “bone tired”. Fatigue can be a symptom of a chronic illness, a complication of a condition, a medication or treatment side-effect, or due to constant stress. Fatigue on its own can be incredibly challenging to manage, however, when adding a child or family responsibilities to the mix, it can feel like an insurmountable battle. Challenges of parenting with a chronic illness Parenting with a chronic illness comes with its own challenges, such as feelings of guilt for not being the parent you envisioned yourself being, constant unpredictability, fear of the future, and more. For many, physical limitations may have been expected, depending on the nature of their condition or its treatment, but others may be completely unprepared for chronic fatigue and how it might impact their daily functioning. Combatting condition-related fatigue while parenting While fatigue may seem unbeatable at times, there are strategies for managing it that parents might find useful. Here are some ways to combat fatigue: Get moving when you can: It may not always seem feasible to exercise, especially when you’re not feeling great or have physical limitations. However, a little bit of low-effort exercise as often as you can may help provide you with a boost of energy. It may even be possible to allow your child to join in on your exercise, such as a walk around the block or hike with your dog when you’re feeling able. This may allow you to get the exercise you need, while providing a special bonding activity for you and your child. Provide good fuel to your body: What we eat has a large impact on how we feel. Trying to cut back on sugar and processed foods, and drinking plenty of water may help improve energy levels. Practicing and sticking to a healthy, balanced diet is also a great way to teach your children about the importance of healthy eating. Eating well together may help you stay on track, as well as teach your child an important lifelong lesson. Attempt to stay on a routine: Although life with a chronic illness (and children themselves) can lead to unpredictability, attempting to stay on a routine may help improve sleep and stability. Both of which may help you fill up your tank and keep moving forward. Working with your child on developing a daily routine, especially a bedtime routine, and sticking to a schedule as best as possible, may help you both stay on track, get good rest, and feel energized and prepared to take on each day. Give yourself a few human minutes each day: As small as it may seem, taking a couple of minutes every day away from your kids to take a hot shower, put on some clothes, brush your hair, or do anything else that makes you feel like more like a human being and less of a crazed parent might make all the difference when it comes to resetting your mind and body. Practice self-care: Along the same idea as the few human minutes, it’s also important to practice self-care. Rejuvenating our minds can help reenergize our whole being and body. It may seem hard to practice self-care while being a parent, however, the two don’t have to be exclusive. While it’s great to have activities that you do on your own, like yoga or an exercise routine, it’s just as beneficial to participate in activities that bring you joy that you can share with your child. For example, reading a favorite book together, binge watching a show, or playing a board game are all things that might fall under your definition of self-care, while still involving your kids. Enlist support: No parent can do everything completely on their own, especially when living with a chronic, demanding condition. Creating open lines of communication with those you trust may be helpful in creating a support network that can step in when you’re in need. For example, if you know that you won’t be able to play catch outside for an hour every day, you might be able to ask a spouse/partner, friend, or other family member to step in for you if they’re nearby. If your child goes to an activity with others they know, you might be able to tell another, trusted parent what you’re going through in the event that you need to skip a game and need help with coordinating a ride home. There is no shame in asking others for help when you’re in need so that you can get rest or prevent yourself from overexertion that may take days to recover from. Navigating life as a parent and with fatigue are two challenging tasks on their own, but can feel overwhelming together. There is no right or wrong way to parent, just like there’s no right or wrong way to manage fatigue. Let us know if you have any suggestions for parenting while managing fatigue that help you get through each day. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] When I was a nanny in college, I vowed that when the day came when I had kids of my own, I would be a fun mom. I would be stern when necessary, but I would also be playful and silly. I would actively play with my kids, hang from the monkey bars with them, and do all the fun things that I did with the children I babysat that endeared me so to the kids and their parents alike. I would be a rock star when it came to mothering. RA and Parenthood Shooting ahead 17 years later, I am now a mother of two small children. While I have my shortcomings, as all humans do, I will say that overall I am a good mother, and I certainly put a lot of effort and intention into being the best mother that I can be. That being said, I am no diva when it comes to parenting, and I’ve fallen short of that image I predicted for myself all those years ago. Of course, we are all full of energy and idealism in our late teens and early twenties, so age (and reality) does mellow our expectations over time. While age has played its part in the difference between the mother I’d hoped I’d be and the mother I am (few thirty-somethings have the energy to play on jungle gyms that 20 year olds do), the most frustrating limitation I face is my RA. Rheumatoid arthritis frequently pokes up its ugly little head during my quality time with my kids. On a good day, I can give them “airplane rides,” where I lie on my back and use my legs to hoist one of them up in the air with his/her belly resting on the soles of my feet. They absolutely love it, and I am grateful when my joints are doing well enough to handle this activity. That being said, gratitude for the good days doesn’t prevent the sadness I feel when they say, “Mommy, can I have an airplane ride?” and I have to tell them that my bones are sick and don’t feel well enough to give them a ride today. This also happens with swinging them through the air. They each love to walk between my husband and me, putting one hand in mine and the other hand in my husband’s, and having us swing him/her through the air on the count of “one, two, three, whee!” Just like with airplane rides, I can handle doing this two or three times if I’m having a really good day. However, most days it is too big a strain on my wrists, fingers, elbows, and shoulders. I hate having to turn down their pleas to be swung. They can jar my heart with a “please Mommy?” that I can’t meet with a granted request. Explaining RA to Children It is hard to try to explain to a two year old that some days my body can perform an action and other days it can’t. It is also confusing to them that there are some very simple things that my body can’t do at all. My four year old daughter likes to “dance” by standing with her feet on top of an adult’s feet so that each time the grown up raises a foot off the ground, her foot is raised as well. I used to do the same thing with my father when I was a little girl, and watching her do this with others fills me with nostalgia. However, my tender, swollen toes and bunions scream in protest any time she attempts to stand on my feet. She is confused when I yelp in pain when she does something that is greeted with a smile by her father or grandparent. While it is hard to tell my children that I can’t do these fun things with them, I realize that learning to cope with disappointment is a very important life skill, and I would rather raise my children to be compassionate and respond to disappointment with grace than to always give them everything they want. Yet, I have a much easier time refusing them ice cream or screen time than I have in refusing to give them part of myself. Far worse though is the impact RA can have on my mood. When I am in a flare, my patience seems to evaporate and I can become incredibly irritable. There may be no use crying over spilled milk, but when my hips are in agony the pain of getting down on the floor with a rag and some cleaning spray can in fact bring me to tears. On a good day, I can respond to my children’s cries over a toy they are squabbling over with problem solving skills, saying things like, “We don’t snatch things out of people’s hands. If you want a turn with the toy, say, ‘Can I please have a turn?’ and then wait patiently and in three minutes it will be your turn.” But on a bad day, I’m liable to holler, “Knock it off!” instead. About a week ago I spent some time cleaning the living room in spite of being in a good deal of pain. Ten minutes after I had the room picked up, my two year old dumped a jar of tiny beads all over the rug, then dumped a container of miniature rubber bands over the beads. My living room floor went from clean to chaotic in less than 10 seconds. My heart sank, and I felt overwhelmed by the combination of physical pain and messy landscape. I made repeated requests that he pick up all the beads and rubber bands, but he only laughed or ignored me each time I spoke. Cranky and spent, I ended up yelling at him, which made him cry. As the tears welled up in my toddler’s eyes, I immediately regretted that I’d let my flare get the best of me. This “mean mommy” aspect of living with RA is one of the most emotionally painful challenges I contend with. All living creatures react differently when they are in pain than when they are well (a dog licking a wound is likely to snap at you if you come too close). I try to tell myself that I am human, that I make mistakes, and that acknowledging my mistakes and apologizing to my children for them is modeling an important skill. Yet in my heart, I feel like a terrible mother, the polar opposite of the rock star mom I’d dreamed of being. Most people think that arthritis only affects bones. Doctors and researchers are aware that it can also affect tendons, ligaments, muscles and organs, and in some rare cases, even the heart. Mothers with arthritis know that the effects of the disease are even farther reaching, impacting our symbolic hearts as we feel them breaking when RA keeps us from being the moms (or dads or grandparents) that we want to be. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] There are two things I have found that solicit the most unwanted and inaccurate advice from others: rheumatoid arthritis and parenting. Whether it is friends, family members, or casual conversation with an acquaintance, if I bring up parenting or rheumatoid arthritis, it is as if the words "please give me advice" appear on my forehead. Parenting is a tough subject to talk about. In my experience, whether I'm conversing with parents or non-parents, everyone seems to have an opinion on the right way to do it. I have many ideas about the right way to parent my own kids, but my children continue to remind me that I am an idealist, and that they are the realists. The role of parents on how to properly raise children is a hotly debated subject in the culture I seem to engage in. It is a complicated argument, and sure inspires some fire, harsh judgment, and hasty blame. Betty Friedan argued in chapter five of the Feminine Mystique that parent blaming was partly the result of Sigmund Freud's psychoanalytic theory becoming popular, and pervading early 20th century advice from "experts on parenting."1 According to Freud, children harbored unconscious attraction to their parents, and resolving these unconscious conflicts was necessary for proper growth (see the Oedipal and Electra Complex for more). In gross summary, if a mother was too permissive with her children, too withholding, too intrusive, too overprotective, too smothering, or too whatever, the child may grow into a neurotic. The role of fathers on generating neurotics was less clear, which many argue was part of Freud's male bias and/or cultural mores of the time. Friedan's argument and analysis of Freudian theory are far more complicated than I have remotely touched on, but the idea is that mothers were put in an impossible role: "Go to work and your children will turn into delinquents. Stay home and risk messing them up." The role of society, culture, and peers, is completely ignored. Somewhere along the line, it became commonplace to believe that mothers/parents are to blame for all the mistakes of their children, even when they are full grown adults. Some people take the opposite position, and argue that genetics play the greatest role in determining personality, career choices, preferences, ethics, and lifestyle, and that parents have little to do with it. For instance, there are the cases of identical twins separated at birth, who when reunited as adults were nearly identical in their careers, taste in music, sense of humor, and so on.2 It can't be the parenting that explains the striking similarities, so it is likely the identical DNA. Other say it is not genetics so much as the role of peers. Teenagers individuate away from their parents and towards a social group, which shapes values and preferences more dramatically than parents do.3 Plenty of books are written on these subjects, and it is much more complicated than I have touched on. I don't know the answer, and probably never will. What I do know is that when my twelve-year-old stepson is begging for more time to play Clash of Clans, he cites the need to keep up with his friends, and how cool the kids are that have level 10 bases. We can't let him be embarrassed by his measly level 6 archer tower can we? If I weigh in with, “Today's hip is tomorrow's hype, kid,"4 that won't stop the incessant pleading for "just two more minutes please! I just need to collect my loot!" I love my stepson, and I play the game with him, but enforcing time limits is not as easy as it sounds. I also know that when he needs to feel safe and loved, or when he has a question about life and growing up, he comes to his mother and I. It seems to me that a parent's role is neither total, nor totally absent. Genes, peers, society and culture likely all play some role. At the same time, I have made plenty of mistakes that were not my parent's fault, and I don't think my genes, culture, or my peers are to blame either. I blame my lack of foresight. The more I think about this parenting question, the less I know. Speaking of what I don't know, I had no idea how hard being a parent was until I became one. I also had no idea how hard having rheumatoid arthritis was until I had it. Parenting is already an enormously difficult task. Add in the daily difficulties of RA like pain, fatigue, brain fog, inflammation, and stiffness, and the little things become that much harder. I love my children, and am grateful to be able to strive and to struggle raising them, but extremely hard days where I yearn for rest and being off my feet in a quiet room are not uncommon. Some days have been absolute nightmares with flares so severe that I required crutches, or had to lay in bed alone, in quiet, and in the dark. Chasing after a baby with stiff hands, swollen feet, and mind numbing fatigue never gets easier. Just a few days ago, I was in the kitchen discussing a recent blood test with my wife that showed my white blood cell count in the borderline low range. My stepson was busy chasing virtual Pokémon characters around the house, but overheard us and saw us hugging. Even though a Pikachu could at any moment appear, and he might miss his opportunity to run after it with a phone in front of his face, he put the device down, and came into the kitchen. He gave us both a hug, and asked what was wrong. I explained it, and he stayed and talked for a while. As we arrive at the first site of adolescence, an imaginary audience waits in public to embarrass him for being seen with his doting mother and quirky stepdad. Catching Poké Balls and powering up his avatar dominates his moment-by-moment aspirations. Our oldest is now taking the first steps into being a teenager, and our youngest in now taking his first literal steps into toddlerhood. I look at the future and it is filled with unknowns. We are constantly adapting to the demands of RA, my fluctuating health, and a rapidly changing world. There is nothing easy about being a parent with rheumatoid arthritis. At the same time, my love for my kids, the joy of seeing them laugh, and my hopes for their future keep me going despite the difficulties. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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